Discussions By Condition: I cannot get a diagnosis.

lyme-like disease

Posted In: I cannot get a diagnosis. 11 Replies
  • Posted By: not a fifty five
  • June 19, 2007
  • 10:27 AM

I've been suffering from an unknown illness for 3 years and it sounds very much like lyme's disease, even though I've tested negative for it. It's even gone through 3 stages, like lymes. Here's my symptoms (I'm a 21 year old male for reference):

~3 years ago:

-strong headache,
-heart palpitations (felt like it was exploding)
-increasing blood pressure,
-loss of appetite,
-weight loss (through exercise mainly, not unexplained)
-No fever :confused:
-sweat glands didn't seem to work right, and very suddenly so. One day I was exercising hard and sweating profusely, the next day, the same amount gave no sweat and my legs burned terribly. Drinking water did NOT help. This lasted for about 5 months.
-I went hiking a lot.

2 years ago:
-very bizarre twist in symptoms.
-Blood pressure falls from 150/90 to 80/60 within three months (this was the weirdest part of it... I had been eating a lot of fast food and stuff so you'd think would raise blood pressure, and I had gotten to 150/90 previously after lots of exercise and eating little?!),
-daignosed with mild diverticulitis after a cat scan,
-severe back pain/knee pain/other joint pain,
-small muscle spasms all over every few seconds,
-diagnosed with GERD,
-weight gain (from the anti-depressents they put me on I think)
-ESR of 30,
-felt like I was dying
-No fever
-Grey lines and pain over ribs
-weight gain
-Culminated one night while lying down when I couldn't feel my pulse and my entire body went motsly numb for about 12 seconds, wore off like that tingly feeling you get when anaesthetics wear off. Very very scary. It felt like this would only happened at night, so I slept during the day for about a year.

1 year ago-present:
-normal blood pressure again
-increasing joint pain, expecially knees/rib/ and now hip just recently :confused:
-fatigue increasing
-joints "drying up"
-Still have GERD and getting worse (related??)
-No fever
-ESR of 24

Also some very weird symptoms include when I couldn't stop walking or I'd feel terrible all over two years ago (which wore off), and the fact that taking showers for some reason seems to spread which joints hurt. Honestly, I thought this last symptom was crazy, but recently I tried showering every day for 2 weeks and I'm now getting pains in joints I've never had pain in.

It sounds to me a lot like lyme's and I was considering having another test taken, what with the several stages, ending up with joint pain, etc. Is this "Igenix" place I'm hearing about reliable?

Some of the other guesses doctors have made have been CFS, fibromyalgia (current diagnosis even though I have 0 of the 17 "tender spots"), Cushing's (tested false). All medication, mainly anti-depressents or pain pills, have made my condition worse or had no effect.

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11 Replies:

  • Well, your doctors sound like quacks to me if they're just making guesses at this point. That is your first indication you need to find somebody new. Endocrinologist, or a Rheumatologist, for starters.As for your Lyme tests, did you get a regular old ELISA/titer test? Did the doctor do a Western Blot? You need to get a copy of the results, to see if any of the bands were positive. You should also have a test run by a Lyme literate doctor, who can send your samples to the appropriate lab. (yes, Igenex is reliable. I tested negative with the blood sent to a different lab, and very positive when sent to Igenex).The lyme doctor will most likely test you for things like exposure to mono, Ebstein-Barr, etc.. to *rule out* other chronic illnesses, Rheumatoid Arthritis, Lupus, etc.. because frankly, he wouldn't be doing his job, otherwise. He will also run some tests on your Thyroid.. have you ever been tested for Hypo/hyperthyroidism?I've been to several doctors, with the more recent one (my neuro, for example) telling me it wasn't Lyme.. also telling me it was NOTHING they could possibly think of. Including Fibro. They gave me this bogus diagnosis of Polymyalgia Rheumatica, which might have sounded like a possibility because of the symptoms, but my age doesn't fit.. and neither did my SED rate.Get away from your current doctors if possible, and look for a Lyme doctor. If nothing else, just rule it out. Then you can move on. :)
    sylvie 31 Replies Flag this Response
  • I'm not an MD, but what hit me was you might have a condition that is causing a potassium imbalance. Classic symptoms of potassium deficiency include fatigue, mood changes, irregular heartbeat and muscle weakness.Have blood tests been done to check your potassium level? Causes of potassium imbalance are complex, and one really does need a medical degree to figure these things out. Don't give up on finding out what's going on.
    Anonymous 42789 Replies Flag this Response
  • I just watched this show last night called Mystery Diagnosis, this guy was sick for about 6 months, doctors couldn't figure out what was wrong with him. He was tested for Lyme disease multiple times, each time it was negative. Turns out, he did in fact have Lyme disease. The doctor that finally diagnosed him did a test on his head checking to see the blood flow to his brain. He had swelling around his brain, and heart. So I guess you can have Lyme disease and test negative for it.
    emilymay8603 37 Replies Flag this Response
  • Look into IGeneX Labs for Lyme testing. They are in California. Also know that many people with Chronic Fatigue Syndrome also have symptoms that are often confused with Lyme, Lupus, EBV,Mono, HH6 and other viruses. Lyme is actually bacterial, but it is a secondary infoection like the viruses.A lot of tthis traces to vaccinesgoogle info on vaccines and CFSLook into how to make yourself wellI highly recommend BioSet or NAET therapy as a beginning point. MC
    Anonymous 42789 Replies Flag this Response
  • Has the calcium level of your blood been checked?
    rad-skw 1605 Replies Flag this Response
  • To Original poster and "unregistered" who is not an MD: K+, potassium channel disruption is newly hypothesized as the mechinism that is damaged in Alzheimer's disease causing beta-amyloid plaques to develop in the brain hence causing the memory loss. Ca+, calcium channel disruption (across the cell membrane is suspected in other similar diseases as well). What are these diseases: Alzheimers, AIDS, CFS/ME, CFIDS, etc. There is lots more to this, obviously. BUT: The dis-ease is taking place at the cellular level. YOU NEED POTASSIUM, CALCIUUM, SODIUM and one other thing that I can't remember IN EVERY CELL OF YOUR BODY!!!!!!!!! If you have a K+ deficiency....think, think, think! What causes this cellular disruption? Is it MULTIFACTORIAL? Get a vaccine, get a virus, get a bug bite, get to be part of an "experiment" unbeknowest to you, get an allergic reaction to whatever is in the vaccine, eat the wrong things, getting micro-holes in your intestines causing permeability of the intestinal walls allowing toxins/nutrients to go through the rest of your body causing your immune system to go haywire......but really, isn't it ALL in YOUR HEAD?!?!? Or DEPRESSION? I am getting REALLY ANNOYED at seeing SO MANY people on these boards with so many of these symptoms! Aren't there any sick Dr.'s hanging about the house that can look at these boards? Why don't the Dr.'s pick up on anything? Where have all the good Dr.'s gone?? Sorry, I am not picking on anyone...I am just so sickened (even more than I was) by the lack of care many on this board are receiving. Either due to lack of medical insurance or just plain, stupid, lazy, uneducated AND most of all: DOCTORS that are SO COMFORTABLE with the way things are, they can't unite to do a darn thing! I don't get paid unless I provide results!!!! I am sick of all the Dr.'s complaining they don't get compensated enough. Have a great day....I obviously need to take a chill pill.
    Anonymous 42789 Replies Flag this Response
  • Thanks everyone :)K+, calcium, and sodium I am not deficient in, as per a lab result a while back, and I don't suffer from any of the other nutrient deficiency symptoms I looked up.I'll write back here when I get my results from the new lab tests for lymes.
    Anonymous 42789 Replies Flag this Response
  • thanks everyone :) And no, I do have similar symptoms to K+ deficieny, but I didn't test positive for that. I'll get back to you all once I get the results for my new lymes test :) And for some reason my last post didn't get through :(
    not a fifty five 34 Replies Flag this Response
  • If you were taking a tricyclic antidepressant, this could have caused your blood pressure to fall. Was your potassium level above normal rather than below it?
    Anonymous 42789 Replies Flag this Response
  • Dear V52, I was recently diagnosed with CFS by a new doctor i went to see for one initial visit. At the end of our visit, the first diagnosis written on my form was Chronic Fatigue Syndrome. I called my old doctor/FNP to inform her that I had finally recieved my diagnosis!!! When I told her that I had CFS, she told me she had never been really "comfortable" with the CFS diagnosis. It was at that point I informed her that it was only because she hadn't done any recent research on it. I told her that when they start showing up on your doorstep in droves, because they will with symptoms that follow no pattern or have any rhyme or reason, she will know what it is. Even if she is not "comfortable" with CFS///It is CFS and it is related to the vaccination of our people. The new doctor ruled out any other possibility as there were not many that hadn't already been ruled out. He realized I had over 70 symptoms of this disease including all of the classic symptoms. He did not just pull a diagnosis out of a hat. He is a real doctor who believes CFS is a real disease. The top is going to pop on all of this very soon as more and more people are getting ill and researching their diseases. Most will soon find that it all ends up back at CFS. Sad but true. MC
    Anonymous 42789 Replies Flag this Response
  • visit www.canlyme.com to get up to date info about Lyme.
    Anonymous 42789 Replies Flag this Response
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